My Nonprofit Reviews

My 5 year old daughter has a rare disease called CAPS. We knew from birth that something was “off”, but it wasn’t until a friend directed us to the Autoinflammatory Alliance that we started to get answers. The amazing volunteers recommended to us the names of good rheumatologists in the area. Jennifer and Karen from the Autoinflammatory Alliance walked us through the genetic tests available and taught us how to advocate for our daughter. When we needed to appeal an insurance denial, these lovely ladies immediately sent links to studies backing up medication benefits. They helped us develop a 504 plan for our daughter, organized symposiums to educate other health professionals and caregivers, and fundraise to benefit those in need around the world. We would be lost without the Autoinflammatory Alliance!